May 30, 2011

AMI - 5.21-5.28

After Brad and I spent the night in Atlanta we boarded a plane on Saturday morning. Instead of heading back to KC however, we continued further south to Tampa where we met my dad and brother Dan.

Brad always teases me about renting a 'cool' car versus a 'dad' car. The rental was supposed to be a Taurus or similar car but it didn't take much arm twisting on the part of the man at the rental counter to upgrade us to a Chrysler 300. This is currently one of Brad's favorite cars so when I pulled up outside the baggage area in the red 300 I thought his jaw was going to hit the ground.

The weather in Anna Maria Island, FL was perfect all day, everyday. No clouds, 85 degrees and a gentle breeze. We spent each morning by the pool and afternoon at the beach. The only exception was Tuesday when Brad, Dan and  I went to Busch Gardens to ride roller coasters.

Each night we ate fresh seafood, key lime pie and basically just chilled out. It was fun, relaxing and just what the doctor ordered, so to speak. There are a few more observations and incidents to report, but that will be part of my next update.  There is also a medical update, but that too will have to wait for now.

May 24, 2011

Your co-pilot on this flight will be...

Friday Brad made the marathon trip with me to Atlanta. I figured that since he is now officially graduated from 8th Grade, as of Thursday night, he has a little more time on his hands.

Instead of the usual marathon, I thought I'd make it a little more special for him so we stayed the night in Atlanta. Everything else was the same; the early morning flight, the MARTA, the Zip Car Prius, the doctor appointment, etc. I did rent the car for an extra hour so we wouldn't be so rushed to return the car and get to the hotel.

We laughed, we ate, we hit a few Starbucks, we swam at the hotel, we enjoyed the beautiful Atlanta Spring weather, we stayed up late and watched movies and woke up totally exhausted. My kind of get away!

There was more... but you'll have to come back for that part of the story!

May 20, 2011

My friend MP

I have a fellow PC brother ‘MP” and earlier this month he sent an email to myself and a few others. In his message he thanked us for our friendship and support and letting us know he has decided to fore go any additional treatments. Though I don’t know him well it still came as a punch in the gut. He mentioned this when we talked on the phone a  few weeks ago, so I was not completely surprised however, reading his words crippled me emotionally. I sat on the email until today and then I replied with the following. I wish I knew what else to say……

This email has sat in my inbox for 11 days now.
I look at it every day and wonder "what the heck do I say?"
Today I guess I stopped wondering and decided to act.

We don't know each other in the formal sense of the word, but when I called you on the phone a few weeks ago, I immediately realized how well we really did know each other.

What others don't understand, those living without terminal cancer, is how at ease some of us, perhaps most us become with what is to come. Our conversation and your email immediately confirmed you have truly accepted your fate. As strong as I may appear, I'm not completely with you. I accept the eventual outcome of this journey, I'm just not ready for the ride to be over!

I hope you and your family are able to enjoy to the fullest every second of every day ahead of you. Laugh, cry and generally just enjoy this beautiful thing we call life!

I feel blessed to know you and wish you the peace and grace of God or whomever you look to for spiritual guidance.

May 17, 2011

2011 Prostate Cancer Doubles Shootout

Last Saturday 87 disc golfers competed in the 4th Annual FLHW ‘Prostate Cancer Doubles Shootout’. I would like to thank our Board members and volunteers who did a wonderful of job putting this event together.  The spirit of this event is always inspiring!!!

There were 5 teams from St. Louis, two from Marshall, MO, one each from Topeka and Wichita, KS as well as one from Lincoln, NE.  The rest of the players were from Kansas City and surrounding areas. Though the weather was chilly with an overcast sky the winds died down for round two and the afternoon was quite enjoyable!

Lunch as always included our infamous salmon burgers, and much more. We were entertained by a champion Frisbee dog, Towser and the players finished the break with a Ring of Fire filled with tons of prizes!

Due to my love for the sport, this might be my favorite event of the year. It also ranks up there because of the underling purpose of the event. Yes, it is great to raise some money for the cause, but more importantly, I appreciate the opportunity to address a group of men and women that are at or near the optimal age for starting to be concerned about Prostate Cancer and improving their health in general. At the end of the day, if one person gets tested or begins having conversations with their doctor about their health, then it’s mission accomplished!

May 13, 2011

An absence

It’s been a few days since my last post. Sorry, but I’ve been extremely busy! In addition, there is not a lot to report from a health perspective. I continue to feel fine and in fact, perhaps even a little better overall.

Earlier this week Brad had his Confirmation. It was a touching, spiritual Mass and it was good to have family there as well. We had a nice celebration over the weekend. I cannot express enough how proud I am to be his father. How he has handled my condition for the past six years as well as how he has managed other situations make me proud beyond words. He has developed emotional strength and maturity well beyond his years.  He and I will be spending a lot of time together in the next several weeks, and for that I am both thankful and blessed.

Last Friday we held the 3rd annual ‘Friday Night in the Greenhouse’ event. It was beautiful evening and we were delighted to see a number of old friends and many returning supporters of FLHW. It is a nice family event and we raised $1,800 for prostate cancer research and promoted the importance for men to be tested for prostate cancer!

Tomorrow is the 4th annual FLHW Prostate Cancer Doubles Shootout, a two man disc golf tournament. This year will be the biggest, with more players and more prizes than ever before! Once again the weather forecasts for it to be a little cool, but dry.  It was that way last year and turned out to be quite perfect. Looking forward to spending the day outdoors with friends and family. I’ll post plenty of photos and perhaps some video in the days ahead.

Have a great week-end!

May 05, 2011

Are you kidding me?

I am always reluctant to celebrate good news too soon after hearing it. There is usually a 'but' attached to its arrival.

In this case it was last week’s announcement of the FDA approval of Abiraterone (the clinical trial medication I am currently taking). Once the drug received the official approval, all work on opening up additional trial sites ends and the focus for the drug manufacturer becomes the launch of the product. While this makes sense from a business perspective, what this means for little old me is that the University of Kansas Cancer Center drug will not be an approved trial site. It also means I will be returning to Atlanta monthly until my insurance company begins approving the use of the drug for its customers.

Just another case of really, really bad timing and that is the positive spin on what just happened. Actually, I remain thankful that I am receiving the medication in the first place and am confident that eventually it will all work out.

So it’s hello again Atlanta! Welcome me back MARTA train and to the cute little red Prius Zip Car at the Arts Center, you are on notice - I'll be back for you a few more times.

I'm not even going to predict if late May will be my last trip, because it will likely be June, July or God only knows.

May 04, 2011

Exposed once again

Tuesday I had the pleasure of speaking to a large group of pharmaceutical employees. I traveled to Newark on Monday and Tuesday morning at 11:30 I exposed my heart and soul, the good, the bad, the ups and the downs of this journey. I really missed having Mary there this time.  She is my rock.

The audience was warm and receptive.  I hope that it was well received. I appreciate these opportunities, I  enjoy sharing my story, but even more, I enjoy educating people about the disease. I look at it as one small victory at a time. If just one or two people leave that meeting and either get checked or encourage a loved one to be checked, it was well worth my time I would consider it a success. If not that, perhaps someone heard me when I encouraged the audience to eat better and exercise more and to not wait until something happens to make a change. I guess I’ll never truly  know, I always leave these events feeling hopeful.

I met several really wonderful people again and I even discussed disc golf with a few people before lunch. Seems I should have brought a few discs and played a course at Rutgers University. Maybe another time!

As I mentioned before, this month is very hectic, so this is all I have time for now.

May 01, 2011

Guess who's at it again?

Tomorrow I'm off to Newark, NJ where I will have the privilege of sharing my story once again. I will be speaking in front of several hundred marketing and support employees for a large pharmaceutical company. It is an honor to share my time with them and to provide a brief glimpse of prostate cancer from the patient's view.  I will basically be repeating my presentation from March, and sharing my six year journey with prostate cancer.

It's not one-hundred percent serious. I try to work in a little humor, as to not completely depress the crowd after 30 minutes. As I was preparing my notes I came across the slide where I explain that although I am honored to be there, I am not standing up there alone, but rather representing all the other men fighting the disease. I list the names of many of the guys I stay in touch with on line and then I show a list of five men whom we've lost over the years.

What stopped me was the fact that I need to add two names to the list. One was the father of a man who resides here in Kansas City. The other man's daughter had reached out to me years ago when he was first diagnosed. I was quite saddened last week when I received emails from both letting me know their fathers had passed.

This is the truly sad part of this disease, when good men die. And now I find myself speechless. I pray this doesn't happen on Tuesday morning. I will try my best to maintain my composure as I share my story, but there are times like this when I am reminded how much I hate this diesease!